Epilepsy and quality of life

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Epilepsy and quality of life

• John Eriksen and Siri Naess, NOVA Norwegian
  Social Research, Oslo, Norway
• John.Eriksen_at_nova.no

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Epilepsy and quality of life

• The effects of epilepsy on quality of life
• Quality of life measured as subjective well-being
  (Hopkins Symptoms Check List (SCL) 8 items,
  Self-anchoring striving scale/Cantrils ladder)
• Questionnaires, 946 members of the Norwegian
  association of people with epilepsy

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Epilepsy

• A mythicil and stigmatising illness? Grand mal?
• Epilepsy is a brain disorder in which clusters of
  nerve cells in the brain sometimes signal
  abnormally, causing strange sensations, emotions,
  and behavior or sometimes convulsions, muscle
  spasms, and loss of consciousness. Epilepsy is a
  disorder with many possible causes. Occurs in
  combination with other illnesses.
• Probable prevalence 6 7
• Seizures often a one-time experience
• In Norway 40 000 with the diagnosis (less
  than 1 )
• Ab 2 600 members in The Norwegian association
  of people with epilepsy

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The study

• Only questionnaires from members 16 included
  (N 690). Data from 2005.
• Response rate (52 and 40 , ab 44 )
• Age distribution like total population (except
  less respondents 67 )
• Women overrepresented
• Uncertain selection effects a serious problem
  in many studies of chronic illness and
  impairments (patients support groups)

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Subjective well-being

• Hopkins Symptoms check list (index)
• 1. Feeling of faintness, dizziness, weakness
• 2. Feeling tense or keyed up
• 3. Blaming yourself for things
• 4. Difficulties falling asleep, staying asleep
• 5. Feeling blue
• 6. Nervousness or shaking inside
• 7. Worrying too much about things
• 8. Feeling lonely
• Self-anchoring striving scale/Cantrils ladder)
• On the scale below, ranging from 0 to 10, 0 is
  the worst possible life for you and 10 the best
  possible life. Please mark the figure which best
  describes your situation today.

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Previous findings

• Findings in other studies
• 1. Health related quality of life reduced
  compared to the general population, but higher
  than people with other diseases (angina,
  arthritis, asthma, cronic pulmonoary disease),
  Stavem et al. 1994, Hospital based sample
• 2. QoL of seizure free patients not reduced
  (compared with general population)
• 3. Surgery reduced seizure freq., no difference
  in QoL and survival, Stavem/Guldvog 1993-1994

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Our findings

• SCL Cantril
• Eta Beta Eta Beta
• Seizure frequency .32 .22 .30 .21
• Medication/side effects (freq) .52 .45 .42 .34
• Co-morbidity .30 .21 .20 .12
• Time since diagnosis .19 .12 (.13 .17)
• Age at diagnosis (.10 .19) (.13 .24)
• Surgery (.10 .03) (.08 .08)
• ANOVA-analyses
• (Controlled for age and sex)

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QoL and seizure frequency(adjusted for age,
gender, time since diagosis, age at diagnosis,
comorbidity, medication side effects, surgery)
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QoL and medication side effectsMean scores for
respondens reporting side effects
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Summary of findings

• Most significant effects on QoL of seizure
  frequency and medication side effects
• Moderate effects of comorbidity
• Moderate/no effect of time since diagnosis
• No effect of age at diagnosis and surgery
• Insignificant effect of age and no effect of
  gender

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Discussion

• Substantive explanationsOur analysis is
  preliminary. More checking out is needed (side
  effects confounded with SCL, but not Cantril
  time since diagnosis?)
• Sample explanation members of the association
  cp. to patient groups.
• Selection explanations
• People with one seizure not member?
• - Recruitment of people with other diseases?
• - Heavily affected patients not member (or not
  responded)?
• - High drop-out rate